Tom Kindlon

Patient Leader

I have Myalgic Encephalomyelitis (M.E.)* since February 1989, when I was just 16. I wasn't diagnosed till autumn 1994 by which time I was severely affected. Although I am not as ill as I was for the first few months, when I was basically bedbound, only able to read and understand cartoons, I remain severely affected 19 years on, only leaving the home for important appointments or to go to our holiday home for the summer. I blame the late diagnosis, and following advice to exercise, for the severity of my illness as in the early years I was only mildly affected (able to study full-time, once I cut out most extracurricular activities). After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill and disabled for a long period, possibly indefinitely, a prospect that wasn't appealing. Moreover, I realised that there wasn't a huge effort to research the illness well; it wasn't on the radar the way many other conditions were. I have been busy for the last 18 years working away as a (voluntary) ME activist. Much of what mum and I concentrated on in the early years was raising awareness and understanding in Ireland. Mum did over one hundred TV and radio interviews and I have done a few dozens and been featured in most of the national newspapers in Ireland. We have also helped arrange for around 120 Irish families affected with ME to tell their story over the years. A lot more people are diagnosed here now and attitudes have improved. In the last decade, my concentration levels have improved a lot and allowed me to read a lot of research papers in the field. I realised a lot of rubbish was going unchallenged and the pool of people who were trying to respond ever was small, so have spent quite a bit of time responding to papers: I've had 15 letters published in various medical journals along with over 100 e-letters. My proudest achievement was the publication of my paper, "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" at the end of 2011. I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work and sacrifice over more around 15 months. I still live at home with my parents who take care of most of the practical stuff, which frees me up to use the energy I have on ME matters. I follow ME news closely and try to help the ME cause, in Ireland and internationally, as best I can. Twitter and other outlets allows me to share what I find to a wider audience. I believe there is power in numbers and together we can make a difference; conversely, I feel that if I and others don't try, we will be ignored and fobbed off indefinitely with rehabilitative therapies like graded exercise therapy and cognitive behaviour therapy based on scheduling increased activity. *Perhaps better known in some countries as "Chronic Fatigue Syndrome" (CFS), although some definitions for CFS are overly broad.


Best in Show: Facebook Health Activist Hero Best in Show: Community Best Kept Secret


Best in Show: Twitter

For ME/CFS campaigning, raising awareness and sharing information.  — Julie

Tireless campaigner raising awareness and deciphering medical papers in respect of ME despite him suffering badly himself. Truly selfless and dedicated.  — Mary

Provides invaluable source of information for a condition that really needs information shared so people can understand the facts  — Michelle

Tom works so hard to disseminate research and other information about M.E. to keep everyone up to date with the latest news. He is a great advocate in raising awareness about M.E. He is my hero.  — Rose

I receive a continuous flow of information about ME/CFDIS via Tom's postings on the Action for CFIDS/M.E. Listserv. This information is very useful to me because my wife suffers from CFIDS/ME. We are so impressed that Tom -- himself afflicted with this terrible illness -- somehow musters the focused energy to sustain his advocacy and information sharing efforts. Since I don't know Tom personally and he sustains his effort without expectation of thanks or credit, he absolutely deserves the WEGO Health recognition as a Health Activist Hero!  — Joseph

A worthy nominee working hard for many years to educate, inform and encourage everyone to enhance and progress treatment for people with ME. He does this in a positive and constructive way and is held in high regard by all.  — Invest

Tom is ill himself yet he consistently provides the M.E community with interesting and relevant material on the illness. I believe he is the one person you should follow - on Twitter - if you are interested in learning about this illness. Other that that he seems to be a very nice person.

Tom has dogged persistence to keep tweeting ME Awareness messages and share new research results. His determination has been instrumental in challenging flawed research which has had a negative impact on patients (and creating awareness of this with researchers and charities). He is also exceptional at promoting other people's news and blog posts.

Tom is a constant source of important information on Myalgic encephalomyelitis (ME). He is tireless in providing up-to-date and relevant information and is a must-follow for anyone looking for information on this illness. He also appears to be a very nice person. (Apologies if this nomination has appeared twice, my first attempt crasheh!)

Tom Kindlon is the best source of ME/CFS content on twitter. His output greatly assists ME/CFS patients by drawing attention to campaigns, both assisting with/conducting advocacy and challenging bad scientific research as a published author. His work is a prolific act of bravery and self sacrifice in the face of Chronic Illness.  — Matt

Overcoming a severe illness from age 16 with no treatment/ cure by overachieving thru writing on social media.This illness keeps him bedridden but hasn't deterred Tom from excelling in the written word about ME/CFS regarding education, research, alternative therapies, compassion for those who are ill, & putting us together thru social media.  — ParisAbbyxo

Tom researches diligently in order to educate and advocate for M.E./CFS patients. He makes sacrifices and puts effort and intelligent thought into all his communications, despite suffering himself. I am one of many grateful followers in the M.E. community.  — Rosie

Tom Kindlon

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